Essential Thrombocythemia

[Lyndsay87]

Hi, My name is Lyndsay and i am 38. I got diagnosed with Essential thrombocythemia back at the end of May this year. I had high blood platelets for over 10 years. I had gotten a Bone Marrow Biopsy and this is when I found out my diagnosis. I am low end scale and on low dose Asprin. My platelets are 670.

I suffer terrible with fatigue and bruise very easily. Although I get confused to what symptoms come from where because I am also perimenopause and never know what symptom is coming from where.

I have great support from family but that has kind of disappeared because Its not visible. I am to young at the moment for any other medication, I get my bloods done every 3 months.

I have struggled with my diagnosis as I feel like a complete fraud as there are so many people out there with more serious diagnosis. My GP didn’t even know what Essential thrombocythemia (Essential thrombocythemia (ET)) was. I don’t really feel I have anyone to talk to because no one knows what Essential thrombocythemia (Essential thrombocythemia (ET)) is. I didn’t know what it was until this year. I don’t say that I have blood cancer because I feel like a fraud and that I have no right to be saying it.

I would love to hear from others with Essential thrombocythemia (Essential thrombocythemia (ET)) that may feel the same way I do. It has taken me 5 months to pluck up the courage to write on here. Thank you.

[Happy2019]

Hi lyndsay

welcome to the club!

I was diagnosed nearly 2 years ago after a routing blood test. I’m in aspirin at the moment but will be starting meds next year when I hit 60 although that said I’m trying hard to delay it.

I still don’t believe I have it although I know I have. To a point I’ve not even told my family as I don’t want to actually say what it is if that makes any sense. I have no symptoms at all other than hot feet and the occasional bone pain.

It’s certainly a strange feeling!!

[Mia2025]

Hi Lindsay

Thank you for sharing your journey with Essential Thrombocythemia.

I too got diagnosed. It was 3 weeks ago for me.

I’d be happy to exchange with you if you thought it might be helpful at some point.

Although our experiences are unique, a lot of what you say resonates.

I’m sending you much love.

Mia

[Mia2025]

Hello Happy2019

I love your Alias name.

I just replied to Lindsay.

I am sorry you too are going through this.

I myself got the diagnosis a few weeks ago.

I am happy to exchange with you both if you felt we could support each other at some point.

Love

Mia

[AThomson68]

Hi Lindsay, I can totally empathise with all you have been through and feeling with regards to your diagnosis of E.T. I was diagnosed in June this year after years of going to my G.P with fatigue and burning in hands and feet. My concentrating and focus was so poor I felt it affecting all areas of my life and I put it down to the menopause( I’m 57). I crashed my car with lack of concentration in May and that’s when I went and actually felt the G.P took me seriously. my platelet levels were critical level and I was put on aspirin and Hydroxycarbamide. Just hearing the word cancer scared the life out off me and I have read and researched all I could. Such a worrying time and felt my world collapse but relief as at last I knew why I have been so fatigued all these years and not just being lazy as I thought. My haematologist has been brilliant and very understanding, GP not so much as I’ve realise there is a medical battle where The World Health organisation and Haematologists call myeloproliferative neoplasms( E.T) a rare blood cancer and GP’s do not. Mines was very rude about this and this made me feel such a fraud. Like you I know there are much worse blood cancers out there but please don’t take away what you are feeling and how the symptoms can make you feel, it is still a serious blood cancer. Not many people understand but please do not think you are a Fraud, this is a rare blood cancer and if someone does have symptoms they are exhausting and affects so much of daily life. I feel much more at peace with it all now but it did take all this time. My meds had to be increased but levels are starting to come down. Will be on meds rest of my life and only small risk it can go into more serious form. If it’s any help please get in touch I am happy to chat through things as know how lonely it can be with our thoughts. Hang in there

[Heidi_BloodCancerUK]

A big Welcome to you both @Lyndsay87 and @AThomson68
Thank you for joining and posting on the Forum; sharing your experiences and thoughts.
Whilst Essential thrombocythemia (ET) is a rarer blood cancer, there are plenty of people on the Forum that have this diagnosis and I’m sure will offer replies and advice at some point.
You might find it useful to know that the charity Myeloproliferative neoplasms (MPN) Voice have a ‘buddy’ scheme which you might want to consider, this is the link to more information mpnvoice.org.uk/buddy-programme But do stay on the Forum too

@Lyndsay87 you mentioned not knowing what symptoms might be from your Essential thrombocythemia (ET) diagnosis compared to perimenopause, it can be difficult to differenciate, so you might find it helpful to start to fill in an Myeloproliferative neoplasms (MPN)10 Symptom tracker chart so you can see if there are any patterns or changes which might link with days of the month or blood count changes or infections, for example. Obviously over time you’ll become the expert in your own health and Essential thrombocythemia (ET), but the symptom tracker can give good insight and also is helpful when seeing and speaking with your Haematologist. mpn10symptomtracker You can record these on paper, online or there is even a smart phone app. The smart phone app was created with Myeloproliferative neoplasms (MPN) Voice, again for more information about this: saniushealth.com/mpn This link does mention a study, but you can download the app and not be part of the study if you’d prefer.

Please know that you’d be more than welcome to call our support line if you ever want to chat about your diagnosis, or if you ever need any support or information for one of our nurses. The number is 0808 2028 888.
Best wishes, Heidi.

[StPete17]

Hi there! I got diagnosed with Jak2 positive Essential thrombocythemia (ET) in July of this year after seeing my PCP for easy bruising. I am 58 and work out 5 days a week with lots of cardio. I have literally never been sick other than run of the mill viruses. I noticed fatigue and inability to concentrate about a year ago but thought I was just being lazy and complacent as I have worked remote the last 6 years. As a government employee I recently got “ordered” back to the office and forced to drive over an hour one way in horribly dangerous rush hour traffic and constant road construction. That is when the fatigue really hit me and I felt unsafe driving. My hematologist didn’t seem to believe me as she said she had never seen anyone my age with the diagnosis and had NEVER seen anyone with symptoms, as I’m sitting there covered in bruises. My fatigue has significantly worsened the last few months however, possibly because I was also diagnosed with breast cancer in September. It is comforting, albeit sad, to know that other people have the same symptoms. I am set to start treatment for the Essential thrombocythemia (ET) after my breast cancer treatment, which is about to start. Thank you all for sharing and I am happy to have a group!

[Happy2019]

@Mia2025

Hiya

more than happy to exchange! Not quite sure how though

[Erica]

@Mia2025 I will pass your query to Blood Cancer UK for you @BloodCancerUK-SupportTeam

[RadLot]

Hi. I’m a first time poster, although I’ve been hanging around for the last 6ish months.

I was diagnosed in January of this year and I’m 35. My Essential thrombocythemia (ET) was found by coincidence by myself. I have an autoimmune disorder that was diagnosed a few years ago and my GP does my routine bloods for this. However, my specialist is at another Trust and NHS systems are woefully in the wrong century so I have to get my GP to email these to me and then I forward this to my specialist nurse at the clinic.

Purely by chance, I checked the attached blood results around September of last year. I noticed my platelets were very high so went back and they have been high for at least 2 years. I checked with my specialist autoimmune nurse and as platelets are nothing to do with my autoimmune condition the clinic doesn’t check them. And my GP obviously didn’t do anything about this.

After insisting my GP refer me to haematology, they saw me fairly quickly and ran all the additional tests. That’s when I found out I have Essential thrombocythemia (ET), with the CALR deletion mutation.

I don’t really have many symptoms - mild tingling in my hands and feet that started when i started to take aspirin. And then the overwhelming fatigue. This is the worst thing ever. It is constant, but there are days it is so extreme that I have to lay down or my body will just make my fall down. It is nearly indescribable how the utter lack of mental, physical and emotional energy makes me feel.

I’m a frontline healthcare worker, and my sick levels are appalling. I’ve already had to move work area from somewhere I love working, stop working oncall shifts and have reduced my work hours to the bare minimum. Even with all this, I don’t know how long I can keep this up.

But I can’t not work. I’ve checked every possible means of government support, and getting the minimal amount of PIP I’ve managed to was hard enough. There is little other support available, as the amount of benefits I could get wouldn’t even cover my basic bills if I could no longer work. I’m already a burden to my parent, as I have to live with them as I find it so hard to care for myself an embarrassing amount of the time. They have their own financial issues around work, retirement, bills and all the other financial pressures of everyday life.

It’s hard to feel like I’m on the edge of a slope, desperately trying to grip on for dear life

[Happy2019]

@Mia2025

I’ve just emailed you.

[BloodCancerUK-SupportTeam]

Hi @Mia2025 ,

Thanks so much for posting. It’s fantastic to see how supportive this thread is and that you’re wanting to connect directly with other people affected by Essential thrombocythemia (ET)!

As we don’t have direct messaging set up on the forum, and we recommend people don’t share email addresses due to this being an open platform, it would usually be something that our team can support with in the background.

But, I can see that we’ve come to this a little late and you’d already shared your email address. We’d recommend removing this now Happy2019 has got in touch, just to avoid it potentially getting picked up by spammers/scammers.

If you have any problems doing this, please just let us know and we can help.

Take care,

Tom

Support Services Manager

[BloodCancerUK-SupportTeam]

Hi @RadLot ,

Welcome to the forum! It’s great you’ve posted for the first time after becoming a member a little while ago.

I’m sorry to hear about the challenges you are facing at the moment with fatigue and problems at work. It sounds like this is difficult time and I’m glad you’ve reached out here for support.

If it would be helpful to talk things through in more detail with one of our experienced blood cancer nurses, you would be very welcome to contact the Support Line on 0808 2080 888 or be emailing the team: support@bloodcancer.org.uk.

We also have lots of information on our website around Essential Thrombocythaemia, fatigue and work and money which you may find useful.

I hope this is helpful and that you hear from other members about their experiences.

Take care,

Tom

Support Services Manager

[Mia2025]

Thank you Erica. Much appreciated.

[Mia2025]

Hi Tom

Thank you very much for your reply and advice.

Could you let me know how your team can support those of us who might like to connect as a group to connect?

I’m thinking that I could create a private group where we could exchange. I’m a health worker with professional experience in this. I’d be happy to discuss this with your team.

If you could let me know, I’d appreciate it.

Kind Regards

Mia

[Duncan]

Hello there folks, seems there’s a few new members diagnosed with Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))) joining the forum. Welcome, @Lyndsay87, @Mia2025, @AThomson68, @StPete17 and @RadLot. Welcome to the forum that none of us probably ever imagined we’d join!

While I was diagnosed with a different blood cancer, Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))), it’s closely related to Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))) and in fact our treatments are often the same. I know there are many other members of the forum living well with Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))) and other Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))), like @Happy2019 who has already greeted you. If you want to find more posts from others living with Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))) just type into the search box at the top.

I see dear Nurse @Heidi_BloodCancerUK and @BloodCancerUK-SupportTeam have shared some great links to information about Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))). I’d say have a look at the Blood Cancer UK information about Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))) as you’ll see our family of blood cancers and their symptoms and treatment side effects tend to be quite similar: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Just wanted to say I empathise with you about feeling like a fraud @Lyndsay87 and with you @AThomson68 about having a doctor not acknowledge our diagnoses as being cancers. You’re not imagining this, nor being lazy—you’ve been living with a blood cancer!

I’m so glad you sought out answers @AThomson68 and got a diagnosis you can now tend to. I had to change my haematologist as he kept telling me that Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) is not blood cancer and it made me feel distrustful of the haematological crash-course I was suddenly on. Perhaps you might want to consider that with your GP if they continue to not support you in tolerating blood cancer, PALS can help with that if need be.

Seeing your posts about wanting to exchange with others @Mia2025, I hope you come to find this forum helpful for sharing. I’ve found it so in regards to getting to know others living with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) and other Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))), and in fact sharing around the forum what I learn about these chronic health concerns helps me feel useful as I am also a healthcare professional and want to support others. Perhaps you might find sharing your skills here could help with your own survivorship? Might be a pity to silo those skills away from others living with Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))). Share and share alike I say!

I understand that this public forum might feel rather revealing, but then we can share as much or as little as we want, and we don’t have to share anything identifying or too personal.

Hope that helps a little folks, do have a look around the forum as you’ll soon see you’re not alone with those diagnoses.

[Erica]

Hi @RadLot @Mia2025 @Happy2019 @StPete17 @AThomson68 @Lyndsay87 a great big welcome to each and every one of you and this thread really shows the number of people out there and that are on our supportive forum as there are many Essential thrombocythemia (ET) threads.

Personally I feel the joy of our open forum is that we all share our support and experiences on here as opposed to being in a closed small group. It also helps me feeling less isolated and lonely.

As an example I have a completely different blood cancer, but also one of my main symptoms is fatigue which I manage on a daily basis. I find people who has never experienced fatigue cannot understand as our forum friends can

I also like my anonymity on here by not sharing personal, geographical or medical contact details.

We also have the wonderful support of the Blood Cancer UK support nurses on 0808 2080 888

Be ever so kind to yourselves and I really look forward to hearing more from you.